Last month Candles of Hope held its inaugural annual conference on stillbirth and pregnancy loss. The conference, which attracted 120 people, featured speakers from various fields including therapy, research, the arts and media, advocacy and public leadership. Nurses, midwives and people who had experienced loss also participated.
The conference was dedicated to the organization’s founder Rebecca Dreyfus, who sadly passed away only the month before, after a long battle with cancer. She was the driving force behind Candles of Hope and was so pleased the conference was taking place.
The half-day conference, held online, had over 350 registrations. Its featured presentations from Professor Danny Horesh of Bar Ilan University, who told the conference the rate of pregnancy termination is some 10 percent of all known pregnancies in Israel. Stillbirth occurs in 3.5 to 5 of every 1000 deliveries.
Post-Traumatic Stress Disorder (PTSD) is well-known in Israel, but not its link to pregnancy issues. Horesh pointed out that Israeli trauma studies tend to focus on combat-related experiences, as well as other traumas related to the country’s security situation. Only recently have researchers begun to study PTSD following stillbirth and infant loss.
Research co-published by Horesh in 2018 found that pregnancy loss “is a potentially-traumatic experience, entailing a heavy burden of PTSD and MDD (Major Depressive Disorder.)”
“The time has come — and thus this conference — to recognize the potential distress of a stillbirth,” he said. “Awareness is the name of the game.” Awareness and recognition of a bereaved parent’s need to grieve are also essential.
Former Knesset member Aliza Lavie also spoke at the conference. She wrote a law in 2016 that entitles maternity leave benefits to women who give birth to a stillborn baby as early as the 22nd week of pregnancy. Lavie has also advocated for the Israeli healthcare system to provide timely psychological and social support for women who have experienced stillbirth, from the moment of getting the devastating news through the entire medical process, burial and return to one’s community. She spoke about the importance of a protocol of giving bereaved parents full information and choice about the burial of their baby — but several participants remarked that this was still not being implemented in the hospitals. Acknowledging that it takes time for changes to be implemented, Lavie told the conference that a united effort by people from various sectors is key: “Working together is the secret to fixing and changing bureaucracy.”
Although there has been some improvement in the past few years, there is still has a way to go. Each hospital is supposed to assign a social worker to manage these cases and they are supposed to be trained in how to delicately handle these cases, but in reality Candles of Hope is aware that this doesn’t necessarily happen. It’s an ongoing problem that hasn’t been sufficiently addressed and that is something that the organization will be working on.
The Candles of Hope board received an overwhelmingly positive response to the conference, with participants noting the void in available services and expressing appreciation for an event focused exclusively on this topic in a dedicated and open forum. The content included a session about men’s experience of pregnancy and infant loss, which is often overlooked.
Participants commented that they really appreciated the conference as it gave recognition to their suffering considering stillbirth and pregnancy loss is such a taboo subject that is not openly discussed, and people felt that the conference gave them legitimacy.
Comments shared by participants included:
“I experienced a very significant day here. Thank you!”
“Thank you! An important and interesting day!”
“Thanks for this day. Complied and delivered with sensitivity and wisdom.”
“It was great today and also very interesting. Thank you very much.”
“Thank you! So important! A life enterprise you created here today !!!!!!!!!!!!!!!”
“Thank you for a blessed and exciting day.”
“Thank you, you angels, may you continue to spread good.”
“Indeed candles of hope. Thank you very much to all those involved in the initiative.”
“Thank you to all those who shared their difficult experience with the public. It was exciting and a very helpful day. Thanks.”
“Thank you so much everyone. A very important seminar !!!”
“Thank you! It was fascinating and meaningful.”